One Hundred Names for Love: A Memoir
Not so different from a child, I thought, trying to coordinate lips and mouth to speak, saying “twees” instead of “trees,” “betht” instead of “best.” Except that language seems to slide down a child’s throat.
A newborn’s brain contains billions of neurons, many still incomplete. They bush out furiously until about the age of six, when the violent topiary work begins, and twigs are severely pruned, some strengthened, others discarded, until the brain fits both its skull and its world. Another big burst of landscaping takes place about ten years later. How does the brain decide which wiring to preserve and which to dissolve? By keeping what’s useful and killing the rest, it seals its wand-like connections into place. Magic ensues. How does it guess what may be useful? Whatever it uses the most. Hence the antiquity of lessons learned by rote, the skullduggery of abuse, the longevity of bad habits. Think or act in a certain way often enough, and the brain gets really good at it. Children tend to recover much better from brain injury than adults, whose brains are already intricately thatched and patterned. And children’s brains are wired quite differently from adults’, with mainly shorter connections among neighboring neurons. Elaborate long-distance pathways, linking remote areas of the brain, may give adults the edge when it comes to digesting thorny information, seeing the big picture, making difficult decisions—that baggy ghost we sometimes call wisdom—but an adult’s complex wiring is also vulnerable in many more places and easily sabotaged. Even when very young children have had the entire left hemisphere removed (to calm uncontrollable seizures), their right can run the language shop surprisingly well.
But adults? Like cross-country skiing through crusty snow, I thought. The first skier, plowing the path, needs muscle, but the following skier doesn’t have to work quite as hard, and the next in line finds the going smoother still. Each trip packs the snow firmer, deeper, reinforcing the furrow, until it’s easy to sail along with little effort.
Learning, we call it. Skiing through deep snow. The brain hurts from the effort, but the more it traces and retraces its path, the swifter the travel.
I wrapped an arm around Paul’s shoulders and gave him a heartening smile. And Paul understood, despite his severe left-hemisphere injury.
The left hemisphere of the brain is like a child or a private detective; it’s constantly demanding Why? Why? Why? Obsessed with solving riddles, it won’t hesitate at making things up (a hunch, a prophecy, a superstition), because if a predator is stalking you, a wrong answer is better than no answer, and a fast half-baked guess is safer than a slow perfect answer. Neuroscientist Michael S. Gazzaniga has labeled the left brain the interpreter, “a device that seeks explanations for events and emotional experiences.” Whatever befell our ancestors, good or bad, they needed to understand why so that they could predict future events and prepare for them. Mystery causes a mental itch, which the brain tries to soothe with the balm of reasonable talk. The inquisitive, meddlesome left brain, that is; the right brain prefers to stay mum.
According to Gazzaniga, it’s the left hemisphere’s insisting on storytelling, fiction-mongering if need be, that allows us the illusion of being rational and acting with free will. The left hemisphere’s interpreter allows “self-reflection and all that goes with it . . . a running narrative of our actions, emotions, thoughts, and dreams. . . . To our bag of individual instincts, it brings theories about our life.” The left brain engenders a sense of self because “these narratives of our past behavior seep into our awareness; they give us an autobiography.”
Paul’s left brain, his interpreter, was wounded. No wonder he labored to make sense of what was happening. He frequently lifted his open palms skyward in a What’s going on? gesture, his brain still able to mime what he couldn’t phrase. All I could do was deliberately unpleat the worry from my face, and explain slowly in a calm voice: “You’ve had a stroke. It has damaged the part of your brain that controls talking. You’re doing okay. We’ll get through this. Just rest.”
How strange: Paul couldn’t talk, but he hadn’t lost his social sense, and he still understood the dance of etiquette. He would listen intently to the doctors, though I knew he was understanding very little and retaining less. He would greet a nurse with polite sounds, gesturing for her to enter the room or be seated, and when she offered him a small plastic cup, he took his medications gamely, with a sense of duty, as if he was once more the small son of a soldier father.
Crushed at the nurses’ station, his pills became a rainbow palette of potent dust. Little more than a few grains, they packed the force of Fauvist thunderbolts. Specks of lightning in a bottle, with just as much potential for harm. Allopurinol, for control of kidney stones and uric acid levels, tinted the applesauce a brilliant orange; while Coumadin, for slowing down blood clotting, turned vanilla pudding bright blue; and Propranolol, for blood pressure, dyed butterscotch pudding a garish green. But other pills joined the mix and the pharmaceutical jumble smelled acrid and bitter. Paul’s swollen right hand, weakened by the stroke, moved slowly, and he couldn’t coordinate it well enough to take the pills himself. Instead he obediently opened his mouth to be fed like a bird.
What a different scene from the one I’d grown used to. For twenty years, he had stood at the kitchen counter each morning shaking a white plastic jar of mixed pills until the ones he wanted agitated to the top, where he could grab them. The snapping-clatter had reminded me of baseball trading cards flapping against the spokes of a bicycle wheel—a cheerful sound from my childhood. He had studied up on his medications, whose complex schedule he knew by heart. Keeping track of changing doses, he’d split tiny pills with a sharp knife and a steady hand. Cursing and growling at the labyrinth of the automated dial system, he’d phoned in refills, consulted pharmacists and cardiologists with aplomb. While I’d stayed on the sidelines, dispensing love and trying to render useful opinions, he’d steered his own medical life—not just ably but with fascination about the science. He loved knowing that he was taking blood pressure medicine derived from bothrops, a venomous pit viper of Central America, and that if the snake bites you it can cause a stroke, but its venom used judiciously can help prevent a stroke.
A nurse tipped in one small spoonful after another, and Paul twisted his face as each hit his taste buds and lingered in his mouth for a few seconds until he could swallow. Nonetheless, he took his pills stoically, just as he did his insulin shots, which he received in a pinch of skin on his upper back, so he wouldn’t have to watch the needle enter. He’d never needed insulin before, and just in case I’d ever have to administer it at home, a nurse gave me lessons. The first time I jabbed Paul I handled the needle like a dart and he cried out in pain. His eyes snarled: Don’t THROW it! Paul wasn’t coordinated enough to inject himself, and I dreaded the thought of stabbing him every day. Not because I didn’t think I’d get used to the syringes, or even the ritual of filling them, tapping away oxygen bubbles, and piercing the skin. If I misfilled a syringe and injected him with too much insulin, I could kill him. The responsibility scared me. One small slip by me could have huge consequences.
Or one big slip by him. Paul was one of the patients on the floor labeled as FALL RISK. Woefully confused, balance off-kilter, he lurched when he moved, and his vision was skewed—all of which added danger. fall risk earned him a notice on his door, a note in his chart, and the alarm on a string, with one end clipped to his hospital gown in a hard-to-reach spot. He was supposed to ring for an aide when he got up. But he didn’t remember that instruction, and probably hadn’t understood it to begin with. Moments stretched like aluminum taffy when he needed to use the toilet or wondered why he was imprisoned far from home. If he didn’t wait for help, and plunged ahead on his own, an alarm would ring as he jerked the cord free. Patient on the loose! the bell pinged in the nurses’ station. Then a nurse or aide would come running to see if he’d hurt himself or needed help with the toilet. But if no one was at the station, and I wasn’t in his ro
om, the bell might not be answered right away.
Fixated on the idea of home, Paul began trying to escape. With his hospital gown flapping open in the back, face tufted and bloody from clumsy attempts to shave, hair a short cyclone, he waited until the coast seemed clear, then took wing down the hallway, shambling and weaving at speed, subversively heading for the exit, without knowing exactly where that might be. Once, like a deluded Magellan, he circumnavigated the floor, almost making it to the elevators before a nurse and an aide captured him and led him trumpeting angrily back to bed. Several days later, despite his lack of coordination, he managed to wiggle out of his hospital gown without setting off the alarm, put his loafers on the wrong feet, and abscond naked down the hallway, sliding along the wall as if he were installing wallpaper.
Noncompliant was the term the nurses grumbled about Paul, the rebellious patient in Room 252, the running man. Their irritation was easy to understand. Often overworked, with a slew of demanding patients, they didn’t need an errant patient who at unpredictable intervals might risk something really dangerous. Their nightmare was a rehab patient falling, breaking a hip or a wrist, hitting his head, or injuring himself in some other way while under their care. Small wonder Paul’s escapes made them crabby, especially a senior nurse I’ll call Martha, a brusque, stocky woman whose tone of voice drummed her rank. I had the feeling I greatly annoyed her, too, by hanging around so much and seeking a nurse’s help for Paul whenever he needed it.
Trying to stay eagle-eyed, I was haunted by the memory of a close friend who had almost died in a hospital after the wrong dose of a drug was given. Fortunately, she was visited just in time by a well-wisher who happened to be a physician’s assistant and acted fast when she arrived and found our friend lapsing into a coma. Slip-ups occur in hospitals far too often, and it’s no wonder—shifts change, patients hate being there, difficult cases are de rigueur, and some doctors and nurses will be seasoned and compassionate, others less so. And Paul was noncompliant, which really irked Martha.
In contrast, Nurse Marty was mellow and rail-thin, a man with lanky brown hair and a genial smile, prone to discussions about old movies and philosophy of religion. Nurse Melissa, a heavyset woman in her early twenties, usually arrived grouchy, and spoke to Paul in a holler, as if his inability to comprehend speech meant that he was also hard of hearing. I’ve since learned how common this is for aphasics; a well-meaning friend or stranger compensating by speaking louder, as if hammering the words might somehow drive home their sense. Other nurses filtered in and out, and they soon merged into a uniform flow of uniforms. One minute the doorway to the room was empty, the next it framed a complete stranger bent on intimacies. A split second of surprise—from where had this one materialized? Then my left brain’s interpreter, asking Why? might find a quick clue before I even knew I was curious, and feed me the most likely answer.
Liz, a senior-year nursing student interning at the hospital, first appeared as magically as everyone else did. I knew Liz was a student because she was wearing the telltale nursing-student whites. (Cricket players and nursing students had that in common.) And I’d seen shoals of students in the hallway with their instructors. I’m sure she has her orders, I thought warily, sizing up yet another new nurse, but won’t have had much experience, so I’d better monitor her.
A tall woman of maybe thirty with short blond-streaked hair, Liz was shaped like an upside-down triangle—with muscular shoulders over slender hips and legs. We would come to know Liz very well, and in time I would learn that she’d muscled up from her part-time job, heaving bales of hay and mucking out stalls on a thoroughbred farm. Wearing no makeup, she looked cute in a healthy, outdoorsy way, and entered the room briskly, shadowed by another nurse, a slightly older woman with a stockier frame.
“I walked in hurried and rushed, as I almost always felt as a student,” she would tell me later, “nursing preceptor behind me, watching to make sure I didn’t flub up. Administering medication comes with piles of rules, for good reason. We were trained to start with the five R’s: Right Time, Right Place—oral? subcutaneous?—IV? Right Dose, Right Drug, Right Person. Right Person means proper patient identification, which means you methodically ask the person for their name and birth date, and double-check their answer against your medication chart and their wristband.
“Which is why I recall meeting Paul so vividly. A moment of utter flummoxness when I confidently walked in with a little cup full of medications, and routinely asked Paul for his name and birth date. And he pleasantly responded with a faintly beatific smile and a bit bemused look that seemed to say something like I’d love to help you but I really don’t have any idea. I had never met an aphasic. I stammered something to the preceptor like ‘What-do-I-do-now?’ I remember acutely, she answered: ‘Just give him the medication. We all know he’s Paul West.’ ”
From then on, Liz mainly appeared alone, and something about her manner with Paul touched me. For one thing, his plight didn’t seem to disquiet or bewilder her. Had she worked with a handicapped person before? Maybe a grandparent with a stroke? She wasn’t at all awkward spoon-feeding him—Did she have children? She didn’t raise her voice as if he were deaf, and she spoke with him at all times like a grown-up, often smiling or joking. Her tone with Paul was strict, yet kind. When she told him it was a good idea to get out of bed and sit in the armchair for a while, just to change position, and he sulkily refused, she lifted his back up, spun his legs off the bed, shouldered his weight, and helped him into the chair—while chattering good-naturedly nonstop—before he could mobilize any sort of resistance. I laughed. He laughed. She laughed.
“Predatory nursing,” she explained with an impish smile and a wink.
Then I noticed her socks. Dressed all in the mandatory white, she was sporting a pair of socks with loud orange spots. A woman who likes cute socks, I thought, someone after my own heart. It couldn’t be easy to imprint one’s personality on a boring uniform.
Liz told me later that when she overheard the floor nurses grumbling about Paul’s flights, instead of disapproval she had felt a guilty twinge of amused respect. Paul was obviously a feisty contrarian, one wily enough to slide out of his gown when the nurses weren’t looking and hightail it toward the door. She had to admit she admired that, even if, from a nursing standpoint, she also had total empathy with the lament of “He’s noncompliant!”
I would come to learn that Liz’s mom had had a stroke when Liz was young, and Liz had watched her stagger down hallways, struggle with simple tasks, and slowly relearn how to use her body, while nonetheless raising three small children. In time, her mother recovered fully, and returned to teaching kindergarten in the challenging schools of urban Washington, D.C. I think Liz had gradually absorbed her tone of determined goodwill, caring and amusing, but brooking no dispute. The “SIT down, we’re all going to be reading NOW” tone of a teacher who finds pleasure in teaching and chasing after a posse of five-year-olds every day. Her father was a minister in a small Lake Wobegonish Midwestern town. Noticing me getting more and more bedraggled, she cautioned me about needing to “take care of the caregiver,” and suggested that I go home for a hot bath and a nap.
She was right, of course, caregiving takes a colossal toll, and I was feeling its legendary strain.
CHAPTER 8
TO THE AMAZEMENT OF ALL, PAUL BEGAN TO SAY MORE words, and even string some together, but his mood was bleak.
“Finished,” he muttered in a despairing tone, his face expressionless as pounded copper.
“You’re feeling finished. Are you depressed?” I asked, feeling eroded and hollow myself, yet concerned.
Paul nodded yes, then groped for a long while. His mind seemed to bulge as a word threatened to surface. Finally, his face withered into an image of outright scorn for the thing he had to say, but getting on with it nonetheless he added: “beaten.”
After thirty-five years of ou
r living together, I could taste the acrid depths of his despair. “You’re feeling finished and beaten?”
Paul’s eyes welled with tears. I wrapped an arm around him and held him close. His freshly laundered gown gave off a trace of bleach. The hospital scents were starting to make his body smell unfamiliar to me.
“I understand,” I said, desperately trying to reassure both of us. “It’s been horrible. You’ve gotten a few words back. There will be others.”
“Dead,” he pronounced in a leaden tone.
“You’re feeling dead?”
He stared at me hard. I sat down on the bed beside him and cradled his limp hand.
“You wish you were dead?”
He nodded yes, this time with a look so desolate raw it chilled me. I knew from my research for An Alchemy of Mind that gusts of sadness or bouts of anger were a familiar story with left brain injury. And I was afraid Paul was just mobile and lucid enough to find a way to kill himself. His black mood continued all day, and I hovered anxiously, not letting him out of my sight.
Sitting beside the bed while Paul slept, I agonized as I reviewed what I knew about the two sides of his brain and their contrasting outlooks on life, how they specialize in different facets of mind. The left is the chatterbox, the storyteller, the fictioneer, the con man, the liar. It’s superb at list-making and alibis. It values a grid of rules (and in their absence will gladly invent some). It lines up pieces of information in logical ways, nice and tidy, before drawing conclusions. The left relishes reality, adjusts to the world it finds, and whistles a happy tune. The right, on the other hand, is Munch’s terror painting The Scream, a cauldron of negative emotions. A wizard of insight, the right intuits an answer first, and limns the big picture, before it moves on to the details. It excels at reading facial nuances, fathoming music’s spell, feeling words. It’s not enough to catch the information ferried by a sentence. We also need to glean the speaker’s intentions, beliefs, and emotions. The right hemisphere adds hints, leading us beyond the corridors of literal meaning into a labyrinth suffused with irony, strong emotion, metaphor, and innuendo. Pinpointing a noise in space, the right decides whether we need to respond, and if so, how intensely. Juggler, puzzle-solver, and artist, the right feels quite at home with fantasy’s mirage.